Wednesday, August 8, 2012

Post Johns Hopkins: Great Visit, Test Results, and Plan of Action

It's hard to believe only one week ago we were driving to Seattle to board our midnight flight, what turned out to be a long trip to the East Coast (due to the connection flight cancelled at 4 am!). Even harder to wrap my head around how much I learned in just one day, and yes, it was well worth the trip.

Now, where to begin on sharing about this adventure? If you read my previous post about why I chose to make this trip, then you are well informed about my battle with what I suspected to be SIBO (small intestinal bacteria overgrowth), and determination to find an expert I could trust. Dealing with SIBO alone is one thing, but treating it while managing gastroparesis presents a whole new set of challenges.
Because of the connection flight cancelation, we arrived in Baltimore late and had to reschedule the breath test for early the following morning with hopes to have most of it completed by the time of my visit with Dr. Mullin at 10 am. I checked in at 7:30, and started the test by 8 am. After 2 days now of eating the restricted breath test diet and fasting for 12 hours, I was handed a small plastic bag that would be used over the next 3 hrs. The first "breath" collected was completed (called the baseline) before drinking the lactulose solution. Samples were then taken every 30 minutes and levels of hydrogen, methane and CO2 were measured. I was not alone for this test either. Six others joined me throughout the morning, as we read our books, played on our phones (sad but true) and watched an entire movie, The Help. At least I can't say I was bored!

The doctor was able to see with enough time to complete the test and, with much anticipation, my husband and I followed him into his office. He got right to the point, explaining the results were significantly high, something I was prepared to hear. Not good news of course, but good to finally feel reassured there was indeed something other than GP going on, causing the discomfort. Dr. M was incredibly kind, patient, and obviously extremely knowledgable when it came to digestive distress. His holistic approach is what originally attracted me to see him, however, he insisted we be aggressive with treatment, and herbs/diet alone would unfortunately not do the trick.

Weeks prior to this appointment, I started making a list of questions. As with any other important visit with a healthcare provider, I can't stress this enough to make the most out of your time. I include the main reasons for being seen, goals, a brief timeline of my health history, current diet, and then the list of questions. Bring two copies so that both you the patient, and the doctor can go over them together. Dr. M was wonderful about this and spent time reviewing my history, discussing my goals and answering the questions, one by one.

By the time we were done, a plan of action was set in place, including:

1. Agressive approach with antibiotic, Xifaxan (also known as Rifaximin), 2-3 months followed by another breath test. This medicine is almost completely non-absorbable which means they stay in the intestines, and don't cause systemic side effects like most antibiotics do.
2. Continue following a modified low-FODMAP diet. With GP this can be a bit challenging but luckily I am already well informed in this area (see this post for more info) and have chosen to work with a nutritionist, also specializing in GP/SIBO.
3. Supplements include ginger capsules, in separate doses throughout the day with food, Iberogast (which I have but never took consistently), and L-Glutamine to help heal and repair the gut. After the SIBO clears and the digestive tract is absorbing more, we might consider adding some herbs into the regimen to help keep the bacteria at bay.
4. Acupuncture treatments up to 2x/week. This is definitely the hardest one to commit to because of cost. Though I am fortunate enough to have this benefit on my insurance plan, my visits are reaching their limit. Will have to do the best with what I have, knowing full well this has made a huge difference in my symptoms.

As much as I want to take this on without medication, I have decided to put down the fight and accept that this is the absolute best choice for the situation. I feel at peace with it and actually excited that this could be the solution to treating the SIBO for good. The thought of following a GP friendly diet now seems so much better compared to this!

I know this is a long post but I want to continue with a few more key notes, if you have the time. Dr. M brought up an interesting study that discuses a possible link between gastroparesis and an autoimmune disorder, known as autoimmune gastrointestinal dysmotility (AGID). It is a long shot and not commonly tested for, but he though it might be worth checking into. I did my research as soon as I returned, was able to get test information through the Mayo Clinic and found a local lab who can send to Mayo for results! This may take 2-4 weeks and will update the news when I find out. You can read about the study here.

If you haven't already, I highly recommend you read Dr. Mullin's book, The Inside Tract. He not only discuses the digestive system in an easy to understand format, but also shares his own story of struggling with health problems and how he overcame them with a holistic approach.

I will do my best to keep updates as my journey continues. Please remember I am not a doctor. My intention is to share with others what I learn along the way. Always check with your health care provider when making changes to your management plan. You can also contact me for a complimentary health consultation at stephanie@journeywithwellness.com.

Are you currently dealing with SIBO or have in the past? Feel free to share your thoughts and experience in the comment section below so we can learn from each other!

UPDATE: 11/13/12After 2 months of taking the antibiotics as well as plan of action above, including a low-FODMAP diet, my test results have come back NEGATIVE for SIBO!!!May 2013I have retested for SIBO and still clear, woo hoo!

12 comments:

That's great news Stephanie! I have been looking forward to hearing how your trip went. It's a great feeling to finally be getting some answers as to why you haven't been feeling well. I hope you start to feel better with treatment. I believe I am suffering from SIBO too and plan to visit my GI doctor on Monday to talk about getting tested. I was diagnosed with GP a little over a year ago afer having my gallbladder removed. I have my good and bad weeks but recently things seem to be getting worse. I hope to get some answers soon. It's hard feeling like this every day. Keep us posted on your progress and thanks for all your advise and feedback, it's so helpful.Take care,Sarah (Fairfax, VA)

Hi Sarah! Thanks for sharing your story and hope you know you are not alone! I'm sorry to hear you are having a rough go with this but glad this site has been helpful. Please keep us updated on how the visit with your doctor went, crossing my fingers for you that he can provide some guidance and possibly even test for SIBO. With kindness, Stephanie

I have SIBO and am really interested in how your treatment plan has been going. I am currently taking Xifaxan and following the Specific Carbohydrate Diet (SCD). I am interested in adding herbs/supplements but don't have anyone to guide me on that right now - as far as amounts to take, etc. Are you comfortable sharing the amounts and brands you take?

I made an appointment with Dr. Mullin as I feel my current GI admits he isn't confident in his ability to treat SIBO and neither am I. I showed mild gastric emptying when tested - but my current & previous 2 GI's all dismiss it saying I have IBS not GP - regardless - something caused my SIBO & I know it has to be addressed for the SIBO will come back. Anyway, my appointment with Mullin isn't until mid December. I was able to get in with another GI at Georgetown, Dr. Caren Palese, who specializes in motility & malabsorption disorders. I was thinking she might be able to help, but I don't know her experience with SIBO. I can see her in early October. I live just a few miles outside of Fairfax, VA and also wondered how your previous commenter, Sarah, faired and who she sees.

In case you haven't discovered this website, check out www.siboinfo.com. It has been really helpful for me. I just need more guidance on the herbs & supplements.

Emily,Thanks for sharing! That's fantastic you have the opportunity to visit with Dr. Mullin. As you can see, I am a big fan. Keep us posted on how your visits go with both him and the motility specialist. I would love to hear more about your experience with SCD. I'm familiar with that and the website you mentioned but have found it difficult to take in enough calories in the day on this diet when dealing with the addition of gastroparesis. As far as herbs and supplements go, I'm still experimenting. I also take xifaxan and have experienced more stomach pain with it, probably due to the size of these pills! Backed off of supplements to see if anything else was contributing. Ginger at 550 4x/day was recommended by Dr. Mullin. I take Wild Harvest brand but exploring others. That plus magnesium in the evening is all I take right now but there are more options out there for relief. Natural Vitality Calm Mag worked well for me but trying out Magnesium Aspartate by Blue Bonnet currently, less acidic. If you want to chat more feel free to contact me through the link on top of the page! Sarah, if you catch this message, let us know how things have been going for you. Maybe the two of you can connect since you are so close.

Hey there! I also have an appointment with Dr.Mullin in Dec (live in the VA area as well hah), and I have been tested before for sibo , but never said yes to the regimen . I am contemplating it now , but was wondering if he told you to take any sort of probiotic with it , or any yeast medication to counter any sort of negative effects ?? I feel like I have to incorporate probiotics at some point but not sure how ! As of now , they give me horrible symptoms and I dont want to get a yeast infection from antibiotics - I'm sure you understand :)

Hi Alexandra, what a coincidence to have all of these comments come from the same area! Make sure to tell Dr. Mullin I said hello, pretty sure he is familiar with my blog as well as the nutritionist he works alongside, Kasia Kines. Her and I have discussed creating a group page on FB for those with GP and SIBO for us all to help each other. As far as probiotics, a big no-no if positive for SIBO!!! Can really worsen the symptoms and that has been my personal experience as well as advice from doctors. Wait until it's cleared. I avoided the treatment for a long time as well but finally gave in when I saw how severe the results of the test were. The pros outweighed the cons and it's more important for me to get rid of bacteria so I can begin absorbing food better. Hope that helps and keep in touch :)

If any of you are interested in being in a SIBO/GP private group through Facebook, let me know. Seems there are a number of us out there that might be able to learn from each other! Send me an email at stephanie@journeywithwellness.com and we can work out the details.

What ever happened with you SIBO? Do you feel like taking the medicine helped overall or not long term? I'm really torn. Taking Diflucan a year ago really added a whole new level to my digestive problems so taking medicine is something I've really avoided.Also, you seem to enjoy such a varied diet, do you not suffer from reflux or stomach pain? You are able to digest fats? Just curious, feel free not to answer. I hope you are feeling better. I appreciate the advice on the acupuncture. I'm currently having Bodytalk treatments and Chiropractor treatments, but not getting the results I was hoping for.Thanks for your honesty in your blog. You are in my thoughts. It's nice to feel not alone.

May I ask if you took ginger before or after meals? Also, was Iberogast once a day at bedtime, or also with meals? I've been attempting to rid of SIBO for 4 years and I'm currently pregnant so I won't be starting any treatment until afterwards, but I'm going to bring your regimen to my doctor so we can have something to go off of. I'll be using herbal antibiotics only most likely, since I've become resistant to Xifaxin after 2 doses. I also have gastroparesis and chronic constipation - they're miserable alone but together, oh my. Thanks for posting your story AND your updates on the web for the people still trying to figure it out. :)

As most of you probably know, ginger is a proven home remedy for nausea, vomiting and inflammation and a good friend to anyone with GP. Ho...

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